High, low, and somewhere in between

I just read an excellent discussion about the use of the terms “high” and “low” functioning with regard to autism. The author generally finds the terms useless and perhaps even inappropriate. I never thought about it before, and now feel the need to explain why I use “high functioning” with regards to C. It’s partly about clarity, but mostly, it’s a simple act of respect.

In terms of clarity, C appears to be a completely different child on paper than he presents in real life. Developmentally, he is extremely delayed physically, emotionally, and in other, less obvious ways. But he compensates to the point where if evaluations aren’t done, people sometimes overlook his issues. Other times, because he functions so well in an adult world, I find myself justifying his diagnosis to people because they “just don’t see it.” I recognize that this is not my problem, but I feel the term “high functioning” makes people re-think what they thought autism was (usually the Rainman generalization, which, incidentally, fits C in many ways). It seems to help the uninitiated understand the spectrum part of “autism spectrum disorder.”

There are those of you out there who struggle every day with children far more afflicted than my own. It goes back to one of my earliest posts about how it could be so much worse AND so much better, and while I can’t know exactly how you experience things, I can extrapolate a bit based on my own experience with my own child. To the parents of those children, I admire you greatly. You have earned your wings while we are merely passengers on the same plane. There are times when I feel the word “autistic” is almost too strong a word for C and it’s not because I think he doesn’t resemble your child, but rather because I know our road has been far less bumpy than yours.

I know – and I try not to diminish it, but when I see these kids who are so severely involved and impaired and then I look at their parents who are barely hanging on by their fingernails….oiy, it’s a tough one.